A patient arrives in the ICU after suffering a traumatic brain injury. He does not have decisional capacity as he is on invasive mechanical ventilation. He only has one sibling and no spouse or children. In the state of Illinois, therefore, his sibling is named surrogate medical decision maker under the Illinois Healthcare Surrogate Act.
It has been several days, and his recovery is going to take weeks or months. This necessitates him being on invasive mechanical ventilation long-term. His sibling refuses, stating that the patient had previously told her that he would never want to be hooked up to machines.
Yet, here is the rub: under the Illinois Healthcare Surrogate Act, in order to forgo life-sustaining treatments, he must have a "qualifying condition" under the specific language of the law:
"Qualifying condition" means the existence of one or more of the following conditions in a patient certified in writing in the patient's medical record by the attending physician and by at least one other qualified health care practitioner:
(1) "Terminal condition" means an illness or injury for which there is no reasonable prospect of cure or recovery, death is imminent, and the application of life-sustaining treatment would only prolong the dying process.
(2) "Permanent unconsciousness" means a condition that, to a high degree of medical certainty, (i) will last permanently, without improvement, (ii) in which thought, sensation, purposeful action, social interaction, and awareness of self and environment are absent, and (iii) for which initiating or continuing life-sustaining treatment, in light of the patient's medical condition, provides only minimal medical benefit.
(3) "Incurable or irreversible condition" means an illness or injury (i) for which there is no reasonable prospect of cure or recovery, (ii) that ultimately will cause the patient's death even if life-sustaining treatment is initiated or continued, (iii) that imposes severe pain or otherwise imposes an inhumane burden on the patient, and (iv) for which initiating or continuing life-sustaining treatment, in light of the patient's medical condition, provides only minimal medical benefit.
He does not have any of these. Thus, under the Act, his sibling is not authorized to forgo life-sustaining measures without a court order.
Now, this is a fake scenario I made up for this article, but this kind of situation happens all the time in many ICUs across the country. I picked Illinois' law because it is my primary state of practice, but I suspect that many states have very similar types of laws.
And so my message is this: if you want to be certain that, were you to lose decisional capacity, all the medical care you receive is consistent with your own personal values and preferences, then you must do two things: (1) Get a Living Will; and (2) Appoint a Healthcare Power of Attorney who will enforce your values and preferences.
A Living Will is a document that specifically outlines how much care you want if you have a serious medical illness or terminal condition and you lack decisional capacity, such as the patient in our case above. It needs to be done when you are of sound mind and body. A Healthcare Power of Attorney is an individual authorized to make medical decisions - and medical decisions only - on your behalf were you to, again, lose decisional capacity. It can be anyone of your choosing.
It is so important that these two documents (see below for the links on how to create them) are done as soon as possible, even as soon as you read this, because you never know when you will suddenly become ill, or get into an accident, and then lose decisional capacity. Without these two documents in place, depending on state law, it is possible that you may get care inconsistent with your values and preferences.
They are very easy to create, and they of the utmost importance. I have them, and I am very specific about what I want and don't want if I have a terminal condition. You should get them as well, and you should get them today.
